HUNTINGTON'S AND ME -A GUIDE FOR YOUNG PEOPLE
by Alison Gray with drawings
by Bronnie Webb published by the Huntington's Disease Association (Wellington) Inc.
"Huntington's Disease is a family disease. When someone in the family has it, everyone becomes involved -
parents, grandparents, aunties and uncles, sons and daughters. Everybody's lives change. Young people have to come to terms
with the fact that their mother or father or grandparent is not like most other people. They have a condition that is incurable,
gets progress-ively worse and can be passed on through the generations.
Young people affected by Huntington's need to have correct and up to date information as early as possible
- they want to know the truth and this must be provided in such way that it is informative and factual, as well as supportive.
With predictive testing available to those eighteen and over, the young must have this information early so they have time
to consider the implications of testing, not only on themselves, but also on their family and friends.
This book provides the latest information about HD and offers strategies for coping with immediate and
long-term challenges. It is soundly based on the experiences of young people themselves. Some have just learned that HD is
in their family, others are considering predictive testing. Some have already experienced the sad loss of a parent.
The book shows that the experience of coping with HD is not all negative. Young people in HD families
gain strength and courage. They learn to face the present and the future with love, acceptance, compassion and hope. This
book is an essential guide for that journey - for both young people and adults.
What This Book Is About
Some Facts About HD
Why is it called
How Do people get HD
What does HD do
What the scientist
are doing-the hope
HD In Your Family
Why is HD so scary
To Help You Cope
An ABC to help you cope with HD
Some Ways of managing
What about predictive testing?
An ending - but not the end
Where to go for help (lists HD associations
The book has quotes, poems and stories from those whose ages range from
8 to 22 . This is a book for young people who live in a family where someone has Huntington's disease. It
is also for young people who want to know more about the disease and how it may affect their friend(s).